Mito symptoms in Mothers

[Guest guest]

I want to share my weird symptoms here also.

About 8 years ago I talked with my family Dr. about arthritis like aches in

my ankles, feet, elbows & wrists and almost a choking sensation (like

wearing a turtleneck) constantly around my throat. I have always thought the

choking feeling was pretty crazy and felt like the various Drs. did too!

If I sit in one positon for more than a few minutes I have to slowly

start moving again to get " warmed up " and be able to move without pain. The

Dr. did some bloodwork for arthritis - nothing conclusive and offered some

pain medication. I did not bother with that.

These symptoms have gradually gotten worse, although I stay active through

the day & walking @ 12 miles a week as well.

Laurel -3- was diagnosed with Complex III this past August and I have been

curious if my symptoms are related.

Have any of you noticed these particular joints/muscles aching like this?

Maya

[Guest guest]

Dear Kathy,

I would like to know if your daughter had problems before age 12? or all

her life before being diagnosed ? I have a daughter about to turn 13 and i

worry about her having mito. cause her younger sister does. My 12 ( almost 13

yr old ) has had some symptoms that make me think she might.

[Guest guest]

Kathy,

I'm sorry to hear about the loss of her dad and brother. Did they have

mito? I'm sure the emotional stress didn't help her. I have been told that

people who have mito. since their bodies are already stressed from the

disease that any other stress added to that can make matters worse. I " m glad

to hear you get 6 hrs of help, is it daily or 6 hrs weekly? It took me a

while to get things into place, i get 6 hrs 3 times a month which helps. take

care.

[Guest guest]

My daughter now 15, was diagnoses with Complex III at age 12. She complains

a lot about her head hurting, occasionally she complains about her feet

hurting. I usually tell her to walk, because she sits lots, this would help

her foot. She also has chronic ear infections.

Kath

Mito symptoms in Mothers

I want to share my weird symptoms here also.

About 8 years ago I talked with my family Dr. about arthritis like aches in

my ankles, feet, elbows & wrists and almost a choking sensation (like

wearing a turtleneck) constantly around my throat. I have always thought the

choking feeling was pretty crazy and felt like the various Drs. did too!

If I sit in one positon for more than a few minutes I have to slowly

start moving again to get " warmed up " and be able to move without pain. The

Dr. did some bloodwork for arthritis - nothing conclusive and offered some

pain medication. I did not bother with that.

These symptoms have gradually gotten worse, although I stay active through

the day & walking @ 12 miles a week as well.

Laurel -3- was diagnosed with Complex III this past August and I have been

curious if my symptoms are related.

Have any of you noticed these particular joints/muscles aching like this?

Maya

http://www.umdf.org/support/listpolicy.html - please contact

mito-owner with any problems or questions.

[Guest guest]

My daughter was born 3 months premature. At age 8 months she was diagnosed

with Cerebral Palsy. Right from day one she had problems with swallowing,

she gagged easily. She had surgery one both of her legs at age 5, both feet

turned in half way around and one almost all the way. Other than her funny

walk, ( walked alone at 27 months) she didn't really snow many symptoms of

anything else being wrong. She had seizures, but I contributed those to the

CP.

After the loss of her dad and brother when she was 9 yrs old, her health

really went bad. She lost bladder control, her speech became stuttery and

slurred at times. Her seizures increased, part due to her cycles starting at

age 11. Her balance is very unsteady now, to where I really worry when she

decides to do stairs.

She was diagnosed 3 yrs after her dad and brother. I don't know what the

emotional truama did but it really made this disease run rampant. She is now

home all the time except when I leave her at a caregiver on weekends. I do

have in home help for about 6 hours during the day.

I would be happy to answer any of your questions. If I can help let me know.

Kath

Re: Mito symptoms in Mothers

Dear Kathy,

I would like to know if your daughter had problems before age 12? or all

her life before being diagnosed ? I have a daughter about to turn 13 and i

worry about her having mito. cause her younger sister does. My 12 ( almost

13

yr old ) has had some symptoms that make me think she might.

http://www.umdf.org/support/listpolicy.html - please contact

mito-owner with any problems or questions.

[Guest guest]

Kath, I am so very sorry to hear about your family's tragedies. God bless you and your family, and may you not have any more heartbreak to deal with.

You have had more than your share. You sound like a very nice and caring person, and I appreciate that you can be thoughtful and kind after losing so much.

Peace be with you.

Virginia, Emma's Mom (19 months, Complex I deficiency)

[Guest guest]

Maya wrote:

> Have any of you noticed these particular joints/muscles aching like this?

> Maya

Definitely. I have three children and my youngest was biopsied in early 1990's

and diagnosed with complex IV. I have been

exhausted for years, but always figured it was from taking care of chronically

sick kids. I always got sick when our PE

class did track, and avoided running at all cost, but was always able to swim.

I have the tendency toward low blood sugar

as well as low blood pressure, and spill ketones easily, but I never knew that

this wasn't normal. The first hint that I

might have mito came when Dr. Shoffner suggested that I take Co Q when my

daughter's biopsy came back positive. I had so

much more energy, and felt so much better, although it took about two months

before I felt the difference.

Over the past couple of years I have developed severe joint pain, along the

lines of arthritic type pain, and stiffness.

Too much co q will worsen it, and so will not enough. When it progressed to the

point that I had great difficulty walking,

after a fairly significant illness, I was put on carnitine. It has made a world

of difference and I rarely experience the

severe joint and muscle pain that I used to. I am extremely careful about my co

q dose now, also.

I had a skin biopsy a couple of years ago, that showed abnormal mitochondria as

well as some glycogen and lipid deposits.

This combined with my symptoms and the fact that all three of my kids are

symptomatic, and my youngest was biopsied, led

them to diagnose me with mito as well.

I highly recommend the carnitine, I'm not sure I'd be functioning without it.

Jeannine

[Guest guest]

In the early 80's we had a chromosome work up done, because of 5

miscarriages all in the 1st trimester except one which was a boy and I

carried him to almost 5 months.

Her dad (Mike) had a deletion on one of his chromosome groups. When we had

this done in the early 80's the Dr's could not tell us what the deletion

meant or if it could cause a problem. Her dad had hard to control seizures

as a child and occasional ones on into adulthood. He had been 6 yrs without

a seizure at the time of his death (car accident, hit by a drunk driver).

My son started having seizures 12 hours after birth. At that time

the Dr's told us he had a subdural bleed from a hard delivery, no forceips.

He came way to fast, no break between contractions. He had lots of trouble

handling the different seizure drugs out there and reacted severely to

several. He lost lost all of his speech by the time he was 4 yrs old. He had

low muscle tone, never did get him toilet trained. had similar

symptoms as my daughter yet different. He died in his sleep on what would

have been his dads 39th bd. was 3 months short of being 12 yrs.

I have no diagnosis on him, but some of these mito disease affect the heart.

In looking at 's school pictures he shows puffiness, like retaining

water, the last two years of his life. Any physical activies would make him

flushed in the face and short of breath. They never did an autopsy on him,

but I believe now he had a heart attach that morning. Now that I can think

more clearly and look at his pictures, think of his symptoms, this is the

most likely thing that happened.

At that time in my life, losing his dad, him and his brother spending a

month in rehab recovering from his injuries he recieved in the car wreck,

most was too much to even think about for a very long time. Im still an

emotional wreck at times, especially around special days, even though I have

married again, it will always be hard where my son is concerned. Watching my

daughter lose ground daily is hard and I worry about my son Joe driving now,

I don't have any spare kids to lose.

I empathize with all parents who lose kids or deal with this horrible

disease.

I get 6 hrs of help every day during the week and 4.5 hrs each day on

weekends. At times my daughter is total care.

Kath

Re: Mito symptoms in Mothers

Kathy,

I'm sorry to hear about the loss of her dad and brother. Did they have

mito? I'm sure the emotional stress didn't help her. I have been told that

people who have mito. since their bodies are already stressed from the

disease that any other stress added to that can make matters worse. I " m glad

to hear you get 6 hrs of help, is it daily or 6 hrs weekly? It took me a

while to get things into place, i get 6 hrs 3 times a month which helps.

take

care.

http://www.umdf.org/support/listpolicy.html - please contact

mito-owner with any problems or questions.